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Thursday, June 12, 2014

PANDAS Deja Vu

Hello, again. Haven't been posting, but doesn't mean I haven't been trying to find answers. Sounds silly, but every once in a while, if things are a little better, I think my mind tries to pretend that we have a normal life. That maybe I made this all up, imagined it, dreamed it, but it wasn't really that bad. And I will take a break and believe that things are livable. But then I'll snap out of it, seeing the face of mental illness, but not really mental illness, living in my house and calling me names.

A couple of years ago, I wrote a post called "I'm the Mom in the Minivan Next to Yours", and I spoke of the symptoms and the things that go on in our life; I wrote at the end that I had to accept that my daughter had early-onset bipolar disorder. I think I was lying to myself. I was tired. I wanted to have a handle on this. There is a way to treat and live with bipolar, no matter how unacceptable that diagnosis. And I am not suggesting that that would be an easy life.

But here we are two years later, and my sweet girl is still not well. Four years of psychiatric medications (usually at least two at a time) did nothing good. Sometimes it took the edge off a bit, but then that effect would wear off, and we'd be off on another wild goose chase.

If I never accepted it before, I do now. My daughter has PANDAS. And PANDAS (or PANS) can be caused by a whole host of illnesses. Although she has shown evidence of HHV6, Mycoplasma and Lyme, I do not believe those are in play at this point.

We have treated aggressively with antiparasitics, antivirals, antifungals, antimalarials, antibiotics. We have used traditional medicine as well as herbals, and we have treated, treated, treated, and my daughter is still.....not fully here. In fact, there have only been a handful of times when I have seen any med or supplement have a real effect on her.

Like when, recently weaned off of Lithium and Abilify, and after several excellent days, she experienced a dramatic and sudden episode of OCD (siblings had strep). Then we saw that azithromycin kicked the OCD. And Advil. Advil has cooled her. And charcoal has cooled her. Not permanently, but enough to get somewhere or just take a breath.

Well, and there was that other time when we did the yeast detox diet with no grains or anything inflammatory, vitamin C nystatin, diflucan and 2 Tbsp. fish oil twice a day. The fish oil was anti-inflammatory, too, and we saw a big gain then. (As in, "Mom, I think my OCD is gone!" after two weeks.)

So if I didn't know that my daughter had PANDAS, I have received some hints about it recently through a green-eyed, curly-haired little four year old that I call my youngest daughter. She is beautiful and such a reminder of who my sweet girl was at that age. Between this girlie and her brother, I frequently feel warm hands in mine....warmer than usual. I can see that they seem ill, but they do not register a fever.

A couple of weeks ago, this happened with my four year old again, but it came with sudden fear to go into another room to get something or go to the bathroom alone. Extreme fear, crying if she found herself alone in a room for a moment. She said she was afraid, and when I asked her what she was afraid, she said, "I can't explain it." She became extremely whiny and clingy. To someone who doesn't know my children well, it might look like she didn't feel well and was whiny because of that. But to this mom who has lived with these children, knows how they respond to illness, knows true fear in her child's eyes over grouchiness and fever, it looks like a deja vu.

Took the little one into the clinic where the rapid strep was negative. But I managed to get three weeks of Azithromycin from a doctor who has helped us in the past and knows our PANDAS history. Once it was in her system, no more fear. Had several great days and then got a letter from the clinic saying the culture was positive for staph. Wow.

So we stopped azithro and started clindamycin for staph. Fear came back.

So......what to do? Obviously, clindamycin isn't working on something that zithro did work on. It would be so nice about now to have a pediatrician who was at least willing to learn about the basics here.

1 comment:

About Me

I'm Mama to four beautiful children, one of whom has PANDAS, Lyme and a few more things that we are finding out about along the way.....We treat girl with psych meds for two years before we found out about PANDAS and Lyme and then another two after we were unable to find local help treating her. Finally, after many side effects and not enough improvement we weaned down off of meds to witness a PANDAS exacerbation of OCD symptoms within the next week. Was that God saying, "Treat what is CAUSING this?" I think so.